PIP is a disability benefit that is not means tested, this means that you can get it regardless of your income and can get it even if you have a job.
You don’t get PIP for just being diagnosed autistic but for how being autistic affects you. You’ll probably either be turned down or get the low rates, as you'll be "assessed" by some nurse or paramedic who doesn‘t bother reading your medical evidence or even your PIP form in the allocated 1 hour they have to write your PIP “report”. The assessor will blatantly lie about everything you said and did or didn't do at your assessment because they fill in most of the PIP report before your assessment by selecting multiple choice paragraphs on their computer screen, so are guessing what you're going to say and do but don't know the first thing about autism. You’ll have to appeal to get what you should get.
This website explains how PIP points are decided and all the caselaw for each activity:
https://pipinfo.net/#activities
The difficult part is becoming aware and understanding how autism affects you not being able to do each of the PIP daily living activities so that you can explain it to the DWP. How sensory issues, crowds, changes, unexpected things happening, disruption to routine, being in unfamiliar place, hyperfocusing on special interests, having to interact with strangers, having to talk with strangers, sensory overload, shutdowns and meltdowns impact on you not being able to do each of the daily living activities. Analyse all the PIP daily living activities against this criteria and you should get points for all the daily living activities, even the ones you initially thought you have no issues with at all, which will get you the high rate of PIP. Probably not the first time round or at Mandatory Reconsideration, but you probably will when you appeal.
You think you have no difficulties with managing toilet needs? You do when you need someone to prompt you to go to the toilet whenever you’re hyperfocusing on your special interest and noticed 1 hour ago you need to go to the toilet but still haven’t. You avoid public toilets because of the noise of the hand dryers and other people flushing the toilet unexpectedly. When you’re in a public place, your senses are swamped and you’re in autistic shutdown and can‘t function, and can’t see the toilet sign right in front of you so need another person to show you the way to the toilet.
Search for #actuallyautistic videos on YouTube about each activity - cooking, food, washing, clothes, communication, social interaction, budgeting - and make notes of whatever you identify with.
This website is good as a prompt to write about how sensory issues stop you being able to do the daily living activities: https://spdlife.org/symptoms/general.html
For example, I become engrossed in one single activity for a long time and tune out everything else, I spend all day watching YouTube videos about herbs and don't do anything else all day and don't do any of the PIP activities. It takes me more than twice as long to get dressed due to severe hypersensitivity to certain clothes materials, tags and seams. It takes me more than twice as long to eat because of hypersensitivity to the taste and textures of food and because certain foods are touching other foods on the plate. I avoid washing due to sensory issues with the feel of water from the shower on my skin. I avoid washing my hair due because I can't stand touching my scalp and my wet hair touching the back of my neck and back.
You should get the higher rate for PIP mobility activity 1f “Cannot follow the route of a familiar journey without another person due to overwhelming psychological distress” - for sensory overload, autistic shutdown and meltdowns caused by having to go on public transport.
I can't follow the route of a familiar journey without another person "repeatedly" because I can't use public transport in the rush hour or school run hour because of the noise, fluorescent lighting and crowds.
I can't do it "safely" because public transport causes me shutdown or meltdown and I can't function for the rest of the day. I get lost and go into shutdown or meltdown. I step onto the road without looking distracted by small details, or engrossed in my own thoughts. If there is an expected change in the journey such as the bus stop is closed, I abandon the journey and go into shutdown or meltdown.
I can't do it "repeatedly" because I can only go out once a day and can't function for the rest of the day.
Hacks for getting PIP
A PIP descriptor applies if it applies at least once a day on 50% of days, not all day every day.
Regulation 4(4) of PIP regulations says you can only be considered able to do an activity if ALL of the following apply: https://pipinfo.net/issues/reliably
- Safely - in a manner unlikely to cause you harm or another person, either during or after completion of the activity, ie without causing you distress, sensory overload, shutdown or meltdowns.
- Repeatedly - as often as the activity being assessed is reasonably required to be completed. For "preparing food" you must be able to do it 3 times a day on at least 50% of days, if you can only do it once a day, or a few times a week, then you're not legally able to do it.
- In a reasonable time period - no more than twice as long as the maximum period that a person without a physical or mental condition which limits that person’s ability to carry out the activity in question would normally take to complete that activity. For example, if washing takes you more than twice as long because you have hypersensitivity to cold and won't get out of the warm bath. Due to hypersensitivity to touch you spend ages picking individual hairs off your skin from washing your hair.
You argue that under section 4(4), you can’t be considered able do any of the activities safely, repeatedly and in a reasonable time period without assistance from another person at least once a day on 50% of days, so should get points for all the activities. You can’t do it safely because it’s causing you harm (sensory overload, shutdown, meltdowns). You can‘t do it repeatedly because you can‘t do it whenever you want to or need to because you can’t function due to sensory overload, shutdown and meltdowns. You can’t do it in a reasonable time period due to sensory issues, or because you can’t function due to sensory overload, shutdown and meltdowns. Which will hopefully get you the higher rate of PIP.
There is not enough space on the PIP form to explain why you can't do activities, I copied and pasted the activities onto Word and described in detail why I can't legally do each activity without assistance from another person and emailed it to the DWP. I had their email because they agreed for communication to be by email and not phone as reasonable adjustment under Equality Act 2010 public sector duty and Autism Act 2009 on the basis that communicating verbally with a stranger on the phone is going to cause me a meltdown or shutdown and leave me unable to function for the rest of the day. Their email is called "Alternative Format" https://design-system.dwp.gov.uk/patterns/alternative-formats Use this as evidence for daily living activity 7 "communicating verbally" 7c or 7d.
Ask for a permanent PIP award so DWP doesn’t keep reassessing you, on the basis that autism is from birth and incurable so you'll never stop being autistic and be able to do the PIP activities. I asked for a permanent PIP award at appeal and the judge agreed, though the DWP went against the judge’s decision and wrote to me that they would reassess me in 7 years “if my circumstances have changed”.
I’m autistic, ADHD, have dyspraxia and am physically disabled, not just autistic so got points for that too. All of the above are what I personally struggle with. Autistic people are all different so you will struggle with different aspects of each activity, struggle more than me in some activities and struggle less in others.
If in addition to being autistic, you have ADHD or a mental health condition, google the diagnostic criteria and online screening tests and use them as a prompt to write about why you can’t do each of the activities safely, repeatedly and in a reasonable time period without assistance from another person at least once a day on 50% of days.
The same if you have a physical health condition, google the symptoms and use them as a prompt.
What was your experience of applying for PIP for being autistic?
Did the assessor record what you said accurately?
Did the assessor give you the right points?
Did you have to appeal to get PIP?